By this shall all men know … part two

Hairless but game, he prepares to throw something for the dog to fetch.

We’re adaptable creatures, we humans. Life falls into a pattern, and what seems impossible to bear becomes the norm.

At first, we couldn’t cross the baby’s will. The hole behind his ear was large enough to lose a button in. It had been left open to drain, in the hopes that there would be some healing of the hollow scraped into the bone of his skull. The district nurse came daily to dress it, and we were told not to let him cry, because crying would make it bleed and inhibit healing.

A child on chemo heals slowly, and for three months he ruled the household. When, at last, I could tell him ‘no’, he thought his world had ended! The look of shock, pride, and frustrated temper on his face was classic! (As was the subsequent tantrum.)

Chemotherapy day was Wednesday. We set off in the early  morning before the worst of the traffic clogged the motorways, dropping the preschooler to my mother on the way. Each week, my sunshine boy would swagger into the children’s day patient ward as if he owned it. Initially, he needed his hands held for balance – but by a year old, he was leading the way. He had stage presence – the ability to draw every eye in the ward with his big grin and his confident bearing.

When they gave us the diagnosis, they told us that attitude is part of the battle; that a child of his age would accept whatever we – through our own attitude – told him. And so we projected confidence and unconcern as hard as we could, taking it in turns to grieve in private where we couldn’t affect the baby.

Blood tests, bone density tests, and x-rays were the first order of the hospital day – to check if his system was strong enough for another dose of the strong cyto-toxins. In 12 months of treatment, he never missed a dose – and at the doses he was on that was unheard of (a quiet miracle which we accepted gratefully).

Waiting for the results was always the hardest part. Later, friends of the hospital built a playground, but until then and on wet days it was a strain keeping an active, inquisitive toddler corralled in a busy ward with no barriers on the doors, fascinating consulting rooms full of intriguing medical gear, and long halls made for running away in.

By early afternoon, the results were back and it was time for his treatment. He would go quiet after lunch, and thereafter scream and cling to me whenever approached by someone in a white coat.

First, we would see the specialist, who would spare us a few minutes to pass down a progress report from his Olympian heights. That’s a little unfair. He was a nice man, and very dedicated – but the hospital hierarchy encouraged his inflated opinion of himself.

Next, we were passed on to the paediatric oncology registrar. He was impatient, and would sold me, the nurse, and the child, when he would stay still as he tried to find a vein that hadn’t been scarred by the burning of the drugs as they entered the system.

(Later, after his first child contracted meningitis in the neonatal ward, he was a changed doctor – and he became a truly great paediatrician.)

I carried the tired, miserable baby to the car, a very different little scrap of humanity from the bold thug that led the way several hours earlier.

If we were lucky, we’d miss the afternoon rush, swing by mother’s to pick up the girl, and be home before it got dark.

The next two days were a wash-out, as the toddler was in pain, unable to keep food down, and in need of constant attention. We stayed in our neighbourhood, took lots of walks with the pushchair, and walked the floors a lot. I became an expert at pegging washing on the line with one hand, while holding the toddler on my hip with the other.

By Saturday he was beginning to recover; by Sunday he was eating again – bare nibbles of his favourite foods, and Monday and Tuesday were our good days.

Then back to Wednesday. Every week for fifty-two weeks.

My wonderful husband worked full time and came home to do washing, cook meals, clean, and play with the children. Apart from my mother who organised her life around taking the little girl on Wednesdays, we were on our own.

For this, we could in large part blame ourselves, and especially me.

Strike three for community spirit? Community is reciprocal. My strike three was the pride that prevented me from actively seeking help – the false sense of isolation that became a reality when I told people who asked: “Yes, we’re fine. No, there’s nothing we need.”

It can be much harder to receive than to give. I urge those going through similar experiences to give others the grace of accepting their help.

Part three  – remission, conception, relapse, and other challenges.

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About joyfulpapist

JoyfulPapist is an adult convert to Catholicism, with a passion for her God, her faith, and her church.
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3 Responses to By this shall all men know … part two

  1. Cecilia says:

    Asking for help can be awfully difficult. The most difficult thing to accept, for me, is that to get any help from social services for my disabled child I have had to go through the demeaning and intrusive process of repeated assessments. This is because the services are severely rationed. The services provided by social services themselves always take my child away from me, as they like to provide “short breaks” and “respite care”. While breaks are needed, I would sometimes like help that would enable me to feel closer to my child and share enjoyable experiences with him, but social services don’t work along these lines. Money is available (I think this may be from charitable sources) to send my child away on holiday on his own to a strange environment. He has limited language, autism and learning disability and I think this could be traumatic for him. Money is not available to pay for a carer to come on a family holiday, so we never go on holiday. A week’s pay for a carer is way beyond my financial means.
    My son has no friends and my attempts to overcome our isolation are not very successful. I have explained to a couple of families with children at church that my son has no informal social contact with non-disabled children and he really needed it but the response was not encouraging. I felt that they were expecting somebody official to do something – not them. I blame myself for not having better skills of persuasion.
    In the charitable sector, Mencap has become very bureaucratic to the point where for them to provide a volunteer costs them over £8.50 an hour in admin time and they then started charging the families a couple of years ago, even those families on Income Support. I think charging poisons the relationship between volunteer and family to some extent. I really valued having someone who wanted to take my child out for an hour and a half a fortnight.
    The Church is terrified of sexual abuse allegations and this seems to have a crippling effect. At least one person has said they can’t be left alone with my son (while I nip out to the shops, for example) because of insurance issues.
    When my son was very young we were supposed to be following an early intervention programme four times a day, as recommended by a UK charity. I asked the church for help with volunteers and our priest was going to try and see if girls from the local school could help out. Nothing came of it, absolutely nothing. There never was an explanation but I guess that the problem was the worry about sexual abuse and insurance issues. So we were left alone; I became angry and embittered.
    Frankly, I should be very surprised if there was any risk at all, but the current climate has killed off the kind of voluntary help that is spontaneous and flexible. The only sort left is now regulated and bureaucratised and so very expensive. At the time my son was young only the Catholic Church seemed to be tied up in this sort of red tape: other denominations locally appeared not to be so worried, but I suppose they may now have caught up. Actually, even if a teenager was going to abuse, it is overwhelmingly likely that at that age, a CRB check would come back clear.
    What we need is kindness, befriending, help from the heart. What’s this to do with Christianity? Quite a lot. And with the social care cuts (our County has cut the adult social care budget by 25% already), along with the selfish and fragmented society we have become, what is going to happen to the elderly who can’t wash, dress and cook for themselves? There hasn’t been a home help service in County for many years – so they can’t cut back on that. There’s going to have to be a lot more help freely given.

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  2. joyfulpapist says:

    My problem wasn’t so much asking for help – which I certainly didn’t do enough of! It was more accepting it when it was offered.

    That said, help is far more freely offered to people with a young, cute, sick child than to families with teenagers and young adults. By the time I started asking, people were scattering for the nearest available cover.

    And the help that is offered isn’t sustained. People will do one thing for you, and then feel their job is done – but supporting your child is not a one-off; it’s a lifetime.

    I absolutely agree with your points about state-sustained support. I would like to see a model of disability care that gave funding to small local organisations who could then provide for their local needs, since centralised agencies are expensive and tediously slow. But then the local organisations need to be monitored, and there is the issue of voluntary versus paid support. And payments are abysmal – the people who care for our precious elderly are amongst the lowest paid in the country.

    We still have to go through medical certification every six months, assessment every twelve months, and full assessment every three years in order for our son to receive his support. So what do they think? His front lobe is going to suddenly miraculously appear after 35 years?

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  3. joyfulpapist says:

    Here is a fascinating read – about one person’s experience as the father of a severely disabled child. Here’s a brief foretaste:

    My son’s birth initially cast me into a wilderness of perplexity, doubt, and discontent. This was part of my wife’s and my tragic mode. My formerly complacent assumptions began coming apart, and over the next few years they crumbled. I had seen the dark side of medicine—the quintessence of the Enlightenment—and firm ground slipped out from under me. Then came the culmination of the Terri Schiavo case, six years to the month after August’s birth. That a Florida court would order the deliberate starvation and dehydration of a woman whose mental disability differed not that much from my son’s struck me as what Gayatri Spivak terms “an enabling violation.” Schiavo’s death served as a turning point for me, and new interests, beliefs, and curiosities began to coalesce.

    In my teaching and scholarship, I now interrogate some of the ideas that once informed my assumptions, and the questions that I ask fit awkwardly into the academic landscape. Is it really true that the unexamined life is not worth living? And is it accurate to say that only the possession of logos qualifies an entity for human status?

    For me, Socrates’ and Aristotle’s monumental truths gave way to questions for which I still do not have answers. And yet I concluded that Martin Luther was wrong. I arrived at sufficient resolution to join a disability-rights group called Not Dead Yet and to pass out leaflets on its behalf when Singer spoke on my campus.

    I do not know how far I wish to go in demystifying logos. After all, I would not want to encourage my students to make unintelligent choices, leave their potential unexplored, or write irrational essays. What I do want to do, though, is bring forward to my students, colleagues, and readers what should have been obvious to me all along: namely, that the Peters and Augusts of the world are as much members of our human tribe as any of us are.

    http://chronicle.com/article/A-Life-Beyond-Reason/125242/?sid=cr&utm_source=cr&utm_medium=en

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